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Why I enjoy treating fibro patients...

Apr 23, 2016 3:46 PM

Why I enjoy treating fibro patients:

It's so heartening to hear so many people share the same stories and symptoms. I thought it would be helpful to hear the doctor's side of fibro. As a primary care doctor, I have seen all sorts of fibro patients: both young and old, healthy and sick. This is what I've learned:

Difficult diagnosis: By the time patients decide to join my practice, they have already seen countless doctors and gone through an exhausting series of tests. They are frustrated by a lack of diagnosis or feel that their doctors question whether the symptoms are just in their head. They feel that no doctor truly understands them or that no one has put everything together and made sense of their symptoms.

Anxiety and frustration: Fibro can be scary. Patients often search the the Internet for answers, which scares them into thinking they have all sorts of diseases or potentially life threatening conditions. Their spouses, family, friends, and colleagues don't understand the daily suffering and become equally frustrated, making everything worse.

Symptoms: Fibro can appear in so many different ways, which can make it even more challenging for patients and their doctors. This is what I see: widespread pain (tender points), poor quality of life, limited activity, poor sleep, severe fatigue, excess stress, weather sensitivity, changes in appetite, decrease in social activity, weird sensations of cold or tingling, depression, anxiety, irritable bowel, and the fibro fog (poor concentration).

What causes fibro: I tell patients that our understanding is limited but we believe:
1) Our brains and pain receptors malfunction and become too sensitive, making every ache and pain almost unbearable.
2) Brain hormones involved in the pain process are abnormal and also contribute to excess pain.
3) Essentially, the brain and pain systems in our body become wired inappropriately.

How to make a diagnosis:
1) Find a doctor who has the time, patience, and understanding. Primary care or rheumatologist can are equipped.
2) Physical exam to assess tender points and to make sure no other conditions are present
3) Basic blood work to again make sure another disease process isn't present.

Prognosis:
Assuming a very good patient-doctor relationship, the outlook is generally very good. I tell patients to expect good and bad days (flares), especially early on. Improvement can take weeks to months. Fibro may never go away, but the main goal is to make it something you can live with instead of feeling like you can't live.

Treatment:
You should be focused on attacking fibro in every possibly way instead on relying on one type of fix. My patients who have overcome fibro are the ones who do the most things on this list with consistent effort:
1) Lots of interaction with your treating doc. Frequent communication of your symptoms so you can work on the trouble spots and stay on track. A close relationship with your doctor provides a lot of reassurance, which also helps with the stress and anxiety component. This is hard to find unless you can afford a "concierge or VIP" doctor.
2) Medicine helps attack the problem pain receptor and hormone problems. This makes your pain nerves less sensitive to the triggers. Any medicine should be started at a super low dose and increased slowly over weeks to months.
3) Low impact exercise: helps condition the pain receptors to help you become less sensitives. Simply walking, biking, or swimming 4 times a week for 30 minutes can make a HUGE difference. Yoga can also be helpful for some patients.
4) Diet: Patients on a well-balanced diet rich in fresh fruits and vegetables and low in processed foods tend to feel better.
5) Sleep: working on developing the right sleep patterns and behaviors goes along way in making everything else feel better.
6) Some physical therapists have dedicated fibro treatments that can help directly focus on the tender points and triggers.
7) Continue troubleshooting with your doctor.

Now imagine if you did all these things. Your bad days would be less bad. Your good days would be more frequent. I enjoy treating fibro because of how treatable it is and how much of an impact treatment can have on my patients lives. It is very rewarding to meet someone at their most hopeless moment and guide through an invisible disease until they can truly enjoy their life. In reality, my patients make themselves better; I just show them how to get there.

- Dr. M, founder of OnePCP.com, an online practice that allows patients to connect with a dedicated online primary care doctor 24/7 via phone, video, or email messaging. I can be reached at info@onepcp.com.

Apr 24, 2016 5:18 PM

Fantastic post.
THANK YOU for caring.

Apr 24, 2016 5:55 PM

I want this doctor in my life! If only they were in the UK. I need another good GP. It's hard only having one.

To the doctor that wrote this, I commend you. Though I do not have fibromyalgia, I do have chronic pain and you seem like a doctor that can understand that. Thank you for joining this forum and thank you for taking interest in those with chronic pain and trying to improve their quality of life!
I hope to email you at some point in the near future as I would love to talk with you about various different things.

Thank you again for your sympathy, empathy, time, care and compassion
Another survivor crawling through the sea of misfortune and pain
Reece

Apr 26, 2016 3:20 PM

I was OK until he said "invisible disease".

Apr 26, 2016 3:38 PM

Thanks doc!! It IS a disease that others can't see - invisible. Since I was DX, I know that at least my docs know it's real. And the suggestions here are very valuable! They work. Thank you.

I'm on SSI so my funds are limited to rent and food, otherwise I'd definitely be in touch ASAP.

Apr 26, 2016 5:43 PM

You want a picture of fibromyalgia now picture you have done all those things only it didn't get better, the medications made you so sick you couldn't take them, that you want to sleep except any good fibromyalgia doctor knows that can be impossible one of the great symptoms.

Now picture a real fibromyalgia doctor who knows it is not just about some pain pressure points that fibromyalgia can include chronic headache, dizziness, sleep disorders, cognitive impairment, memory impairment, anxiety, depression, fatigue, myofacial pain, twitches, problems urinating, vision problems, dysfunction in the jaw joint, various skin problems, chest region pain, nausea, morning joint stiffness, pain, weight gain, cold symptoms, chemical sensitivity...and so on.

Honestly I was going to say this the first day I seen the post but figured it was rather obvious it is a phising advertisement and someone would report it and it would be removed.

Apr 26, 2016 6:49 PM

Shammagren...I'm sorry you didn't find the post helpful. I truly feel for my fibro patients and have helped a great number of them. I am in no way implying that treatment is simple or that the same approach applies to everyone. That's not to say I find it easy or that treatment failures don't occur. As I wrote above under "symptoms," fibro had many different manifestations and affects the whole body.

Fibro tender points are part of making the diagnosis (according to major rheumatology associations), but obviously entails so much more that must be gathered with a thorough history.

Patients have often complained that other people don't feel that they have a real disease, which is why I chose the word invisible. It is quite the opposite of invisible if you have fibro.

My biggest intent in writing this post was to make people feel that there are doctors out there that believe in fibro, that care about the suffering that comes with it, and that believe that people can get better. Hopefully some people obtain some clarity and hope from my post.

Apr 26, 2016 8:19 PM

We have some doctors who have understood us and some that didn't I had to change my doctor two times

Apr 26, 2016 8:45 PM

I see a Myalgic Encephalomyelitis specialist names Heather Livingston at the I.C.C.S. in Fall River Nova Scotia. This would be going alot faster if I could just there more often however I livable an hour away do things are going slowly. Today she did the magnesium Load test, all I felt was chilled, no relief from soreness yet. Myalgic Encephalomyelitis (CFS) & Fybromyalgia are Heather's specialties, I'M lucky to have her.😊

Apr 27, 2016 2:22 AM

Shamagren, I know, it's so very hard to live with fibro. I've got all but 3 of your sx + a few of my own. My heart goes out to you. Hope you get better help, soon!

I'm finally getting treatment that's helping me spend less time in bed. It has taken 40 yrs - 14 since dx, and countless doctors of many kinds, to get here.

I hope this One Doc cares as stated. Just being believed and having an expert on your team who is honest and willing to learn can be invaluable.

I'm not "cured" and I have a Lot of other health issues, but I'm actually helping a tiny bit in the house lately, & smiling and playing with my granddaughters for the last few days.
This is Huge. Nana on the loose!

Keep hanging on the best you can. Your input here is intelligent and valued. I'll be looking to see how you're doing. Thank you.

Apr 28, 2016 9:26 PM

As a primary care provider what would you suggest would help me find a doctor that would listen, and what should I say? I have suffered from symptoms, and severe pain and they have been getting worse for the past two years. For the last two years I have done what you said and freaked out every time I had a new symptom, googling diseases. It wasn't until my recent flare up, where I had all of the symptoms at once (including some less common ones) that I put it together that I most likely have fibromyalgia. I haven't had any Defining symptoms of some of the other diagnoses that can mimic fibromyalgia. I am just scared to go to the doctor, because I don't have a primary care provider that I know. Any info helps. Thanks :-)

Apr 29, 2016 8:49 PM

Asia...I imagine a lot of people are in your shoes. There are several ways to approach this. The biggest problem here the insurance system; most doctors have less than 7 minutes to spend with patients. Even the best doctors can be hard to connect with given the time constraints.
1) Best referrals start with word of mouth. Ask friends and family about who they use and how happy they are with their current providers. That way you get a true insiders perspective of their experience.
2) Try online reviews where patients actually write their reviews (I.e. Zocdoc).
3) Sadly, the best care is available to those who can afford it. "Concierge" doctors generally charge a yearly fee for highly personalized attention and care coordination. This is a growing field of medicine and concierge doctors are everywhere. A more affordable version of this is google's onemedical (charge about $200 per year). This can be expensive but patients who enroll in this kind of care see a big difference in the time, attention, and thought they get from their doctor. If money is limited, it still may be worth doing this for 6 months or so to get on track. I know concierge care can be very controversial.
4) I started an online practice where patients can connect 24/7 via phone, video, or email with me. Online telemedicine may be something worth considering if you don't have many resources near home. Unfortunately this comes with a monthly fee as well. Feel free to email me if I can further help steer you in the right direction. Good luck! Dr. M. Info@onepcp.com

May 01, 2016 9:25 AM

With today's medical facilities and MYCHART patients or a phone call to the office most of the time can get an answer in about 24 +/- hours. Check with your insurance to see if you have a NP or RN 24/7 PHONE service.

Got to be your own advocate and communication with doc's.

🌻

May 01, 2016 9:34 AM

Thank you I didn't know that!

May 01, 2016 9:39 AM

Asia it my not be called MYCHART it I online medical communication records. Example Duke and Cotillion have MYCHART Sentra has myrecord VCU MCV have eppic.., all are online and can be accessed on a smart phone.

May 01, 2016 9:40 AM

Just ask they can tell you.

May 01, 2016 12:05 PM

This is my first post on this app. I think. I have severe fibro fog & prior to having fibro, I had an almost photographic memory so the "fog" is very frustrating. I started having symptoms in 2004. I had my first flu shot & came down with the worst flu in my life & my first case of bronchitis & sinusitis & something else at the same time. I was horribly sick for 2 weeks & my husband at the time wouldn't let me call in to work so I still worked 6 days a week, 12 plus hours a day & when I came home, in pain & miserable, he would "punish" me for complaining. It took 2 to 3 yrs & about 10 so called specialists before I was diagnosed. I had an orthopedic specialist tell me I "was too young to have cancer, so don't worry". Considering my CV worker's 1 yrs told daughter was just diagnosed with cancer & I had donated 16 inches of hair for a wig for her, I was extremely disgusted. Another doctor, who was closer to home than the Dr who finally diagnosed me with fibromyalgia, told me it wasn't an actual medical illness, but "a woman's excuse to be histrionic" & he kicked me out of his clinic! I was so frustrated & depressed & when I went to a pain specialist & was in so much Pain that I cried out during the physical examination, he shook his head & told me I needed to see a psychiatrist for depression & that even though I thought I was in pain, I actually wasn't!
I had to reply to fibro doctor's post on here bc it gives me hope. In 2010, I had a 75 lb box fall on my head, giving me whiplash & knocking me off the step stool I was on & pinned me underneath it. I was struggling to get out from underneath when I heard the store manager yelling my name over the public intercom & after stumbling down 2 flights of stairs & having coworkers seeing my condition & asking if I was ok, I was helped to an in store phone & told my store manager what happened. She told me she didn't care & I was needed back in the front to supervise. I told 2 more managers what happened & was told they couldn't override my store managers orders. After 7 hours of non stop work, I finally had a break & when I sat down in the break room, the pain was so intense I broke down & cried. A few coworkers showed sympathy & hopelessness bc they couldn't help me. I was forced to work another few hrs & was called into the office bc the SM & asst SM were watching me almost faint on the monitors. The asst SM demanded I work past my shift & I begged her to let me go to urgent care. I was told I could go, but that I would be written up! The urgent care Dr was appalled at t+e injuries he discovered & asked why I waited so long to get medical help & when I told him what happened, he said he would file a complaint bc what the SM & asst SM did was illegal. The meds he put me on were so potent, that I was incapacitated during most of My recovery & the SM refused to let me work with the Dr's restrictions, but told workman's comp that I refused to work! During my recuperation, she walked out on the job & when I came back, the new SM forced me to do the exact thing that injured me in the first place & they didn't even comply with the company's instructions to make it less hazardous. Both the emotional & physical turmoil made my fibro so much worse & I was eventually fired bc I no longer "volunteered" to work past store hours without pay. A yr later in 2012, I was in an almost fatal car accident & after th3 first responders used the jaws of life to pry the car door from around my body, I was rushed to the er where I was told I had permanent sciatica nerve damage from where my right leg was pinned in. The person who was responsible for that "accident" caused another "accident" Which impacted all my lower back discs. I'm 36 yrs told & have to wear a back brace whenever I'm awake. My primary care Dr since 2008 just hired a new receptionist last fall who kept telling me she "could;t understand my english" whenever I gave her my name, even though she could understand me perfectly before then. She started giving my drs nurse incorrect mags from me & the nurse started purposefully writing my prescriptions wrong. I'm barely able to leave my house, so my mom or bf would pick up my scripts, go to the pharmacy, be sent back to the drs office, etc. I had the flu, then bronchitis since this new years eve & gone through 3 doses of antibiotics & the constant coughing has been making my fibro pain worse. After I called to get a throat culture appt after my pharmacist recommended it, the receptionist gave the phone to the office manager who started yelling at me & saying she was tired of my complaints! I was just calling to update my Dr like fibro Dr on here mentioned, but due to the receptionist, I was told they were "terminating our Dr patient relationship". Now I'm terrified of looking for another Dr & have been too scared to follow through on getting assistance, etc due to the way I've been treated by my "superiors". I wish I could find a Dr like the one who posted here, but I know I can't afford it. I forgot what quality of life feels like. Anyways, I'm sorry for the long post, I didn't think I had the energy bc I'm also recuperating from a ruptured ovarian cyst 😨 I pray no one else has had to or will -o through similar ordeals!

May 01, 2016 1:19 PM

I have had the same struggle going from a photographic memory to brain fog. It is really a hard adjustment. I am glad someone else had this same experience. I have literally gone from memorizing everything I read instantly, to forgetting what I was going to do next :-( I am sorry for what you have gone through, and hope you find the medical help you need :-)

May 01, 2016 1:40 PM

Thank you for sharing your experiences. I do hope you know that you are worthy of and should be treated with care and respect.
But one step, one day, one moment at a time.
Maybe allow yourself a simple vision of what a better life might look like. And then allow a thought of any small (or large) change you could allow yourself.
Others here will express it better than I have, keep coming back. Gentle hugs.

May 02, 2016 1:35 PM

Thank u so much Asia & 7autoimmunes! 😍 Ironically, Asia, I feel I'm glad someone knows how it is with the memory thing, even though I hate u have g to struggle through it too. I'll start talking & in the middle of my sentence, I forget what I was about to say sometimes argh! When I was younger, I read a book named "flowers for algernon " I think, about someone with a diminished mental capacity who was so happy bc he was oblivious to the cruelty others treated him. He undergoes an experiment that drastically raises his IQ & realizes how he's been treated, but unfortunately the treatment doesn't last & even though he's losing his intelligence, now he sees the world differently. That's how I feel with the fibro fog.
I've tried scheduling appts with pain mgmt drs since 2014 & been told they're no longer allowed to accept cash patients. That was when I was still trying to work. I was stunned, bc since when do american businesses not accept cash?! Others would tell me they are accepting new patients, but as soon as I'd mention my age or having fibromyalgia, I was told they made a mistake & aren't seeing new patients! I called almost 20 different drs & those 2 replies were what I'd get. I was seeing a great rheumatologist who was treating me as pain mgmt bc he respected me struggling to work even though he recommended I file for disability, but after a couple yrs of seeing me every 3 months & charging me his lowest rate, at my last visit he said he "only sees 4k (! ) patients a month & it wasn't covering his bills, so he wanted to see me every month & raise my rate, even though he knew I couldn't work more than 2 days a week after the bad car accident.
My primary care Dr, the one that just terminated our relationship bc of his receptionist passing wrong & rude msgs, couldn't even prescribe 1/10th the meds I was on. I found a rheumatologist online who said she specialized in pain mgmt & fibromyalgia, but had a 2 &1/2 month waiting list. I had an appt scheduled & was told to go to the er if my pain was so bad from cutting back on my meds. I kept suffering & bc of dry mouth side effect from my meds had to have 7 teeth extracted & (does anyone else who has fibromyalgia health really slow? ) ended up having 3 dry sockets & ended up going to the er bc I was hurting SO badly. The er Dr asked if I had any past surgeries & I mentioned the extractions & he told me he "didn't have time to hear my drama (! )" I told him that my dentist told me that counted as surgery & I was at the er bc I had 3 dry sockets & an appt at the same hospital as the er, but I had to wait 6 more weeks. He then said he didn't "know how U PEOPLE are, but I don't have time to deal with ur foolishness! " I was stunned & crying & his intern looked shocked & the er Dr marched me to the receptionist & refused to treat me! I felt like I wasn't even a person & for a month, I broke down crying, even at work from the shame, humiliation, & cruelty of how I was treated. I read a book & was reminded we are all precious in God's eyes (hope I don't offend anyone) & I felt like a human again & when the er Dr billed me, even though he refused to treat me, I actually had the courage to call the billing dept & told them what happened. The lady was so sweet & outraged herself, transferred me to HR & after repeating what happened, I was told I didn't have to pay that Dr, but was still responsible for the triage costs. I received a letter or apology from the medical director, but also received 3 more bills from the er Dr!
When I finally met the rheumatologist, she said my fibromyalgia & pain levels were too severe for her to handle & wanted to refer me to 3 other specialists as well as herself even though I told her I had no health insurance or assistance & was struggling to work 2 days a week. She gave me a sheet of paper to bring to the receptionists & when they put the code in their system, they both were saying they've never seen her charge so much & 1 even went back to ask the Dr to confirm. When the receptionist came back, she apologized & then told me it was $500 if I paid cash & that was the discounted cash price, even though when I first called, they said she charged btwn $150 to $225 at the most. I was so shocked, but was glad I just had a birthday where my family had given me cash & my boss had paid me for 2 weeks in advance for my drs visit. A couple weeks later, she tried billing me for an additional $487! After that, I gave up on looking for a new Dr. Now my fibromyalgia is so much more severe: weather hurts, my nausea from smells is worse, noises that aren't even loud bother me & I wear ear plugs a lot. I'm sorry for the rambling, but knowing people here have similar medical problems, I feel very comfortable & now with the additional pain from the ruptures ovarian cyst, I desperately needed to vent 😫
Again, thank u so much for the kind posts! It's helped a lot! I'm suffering so much right now & feel so overwhelmed & hopeless 😢

May 02, 2016 7:16 PM

sJade hate to say but as long as the overian cyst disolves or burst n you dont bleed to death that is better than them turning to stones an then the next stage in my book. so so sorry you not feeling well. Been there...

take a breth and breath it will all come out in the wash. one thing at a time and one step at a time.

One thing I learned when dealing with docs on a sliding scale get it in writing!

Been in a stuper all day with this @##$% brain fog. You not alone and as I tell myself you got this!

I dont know where you are located but I do know that places like Carilion, VCU/MCV, UVA, just to name a few do have sliding scale/charity care based on your household income. You may even check at your local facility.

Best wishes good luck

May 02, 2016 10:16 PM

Kamel, tysvm for the reply! The ovarian cyst I was told by er, after cat scan, had ruptured, but being they're a catholic hospital, they don't do "women's reproductive surgeries" or even have an ob Gyn! I've never ever heard such a thing! They told me they would help with financial aid, but I receiveD 2 bills today from them, 1 for almost $10k : they said I was there for 2 days. My bf drove me there at 9pm & they had me in a wheelchair in the waiting room, crying & out of breath, until midnight, then did iv fluids & cat scan, dosed me with liquid aspirin! & sent me home at 2 am! Then the 2nd bills says "outpatient care" for over $5600! They said if I kept experiencing the severe pain & nausea, to go to a woma;s hospital er... I have been screaming & crying in pain, but afraid to go to another hospital. Its been 8 days since I was told the cyst was ruptured & the pain has become worse, not better 😭 its pushing against my back & inflaming my sciatica & my emotional support rescue dog has been a nervous wreck. She keeps trying to get me to lay down & I can't sit for more than 5 minutes bc of the pain. I've also gained 35lbs since last July & my body isn't used to the weight & I think my impacted discs are, well, impacting more. I feel my lower back grinding bone against bone. My bf has found a teaching facility & its on a sliding scale basis, they said, but I won't believe it until I see it. I am worried about abdominal bleeding & when the er Dr scolded me & asked why I waited so long to go to er, I told him with the fibro, I hurt so bad every day that I thought it was a flare up until I told my bf I felt like something burst in my belly. The pain is s9 bad that I find myself starting to laugh sometimes now bc I can't believe it's so bad. I don't know If I should keep toughing it out or if I should go to the other er. Btw, its very hard for me to leave the house, so it was a big ordeal & took me 8 hrs before I was able to leave 8 days ago. I can't take a deep breath in & I'm wondering if anyone here has been in so much pain, it feels like their body is going to shut down? I've gotten to that point & I'm so scared 😱

May 02, 2016 11:46 PM

OMG sJade! Yes, I can relate but really, GET HELP, real help ASAP. I think the way you've been treated is illegal in the US. In any case, no more religious hospitals for you. A thought: when you go to a new doc or Hosp, take your Rx's with you so they'll see first hand that you are not a druggie. Best wishes for your relief and gentle virtual hugs.

May 03, 2016 12:11 PM

Just so everyone knows, Dr M belongs to a group of online doctors. I don't intend to correspond further. You can find their site at www.onepcp.com

May 06, 2016 7:31 AM

SJade you are welcome
DePaul in Norfolk Virginia did my surgery. But regulations in my area require that you have one living child and be over 35 or supporting documentation of life threatening conditions. When they took my stuff out, one of the fibro cysts had turned to stone and stage one as large as a basketball wrapped around my lower intestine. All because I did like you are doing. Having been there did that I can say GO, RUN! DO NOT WALK! get this taken care of!

They are correct on telling you to go to the woman's hospital because they have doctors there that CAN assist you! Do no wait if you are still bleeding an hurting it can and most likely will get ugly fast!

Bills that come in the mail. They sometimes fail to tell you it nis your place to call in with the invoice number and update your fincial every month and get in touch with your social service department, they might can help.

The body can only handle so much! GO GET HELP! ASAP!!!!

I live in the USA and my information is based on the area I live in and experience.

Prayers get well soon.

May 07, 2016 9:27 PM

Ok, I'm going to do what you say! My gosh these flare ups, I'm dying!

May 07, 2016 9:57 PM

How do you know if you really have it

Nov 13, 2016 10:50 AM

I want this doctor in my life Now please. In the UK not many Dr's understand fibro and the repercussions it has in all aspects of body and mind. I've had fibro for 15 years and is a constant battle. I still go to work every day in pain and live in constant pain. Got depression, anxiety, chronic fatigue, pains in every muscle and nerve etc....... Sorry if I went on..... Glad i found this app though

Nov 13, 2016 2:36 PM

@oneprimarycare doctor : what are your thoughts about spinal cord stimulation? When do you educate or consider this treatment for patients?

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